Re: Busulfan (Myleran)-Lottie & group

[Guest guest]

Dear Lottie,

This subject caught my attention - I was given Busulfan prior to transplant. It

had side effects for me, but then I get all side effects.  They also gave me

Dylantin, an anti-seizure medicine. That med was terrible!! It gave me severe

head aches and severe dizziness. It was awful. I was so happy when the three

days were over.

Also, I got my BCR ABL results back today. GUESS WHAT???? 0.01%!!!!!!!!!!! Can

you believe it? Dr Delima was so happy and me as well.  He still wants me to

receive Vidalza to clean up any leftover cml cells, but he thinks the donor test

will show 100 % donor. It will be a week before those results are in.I can

hardly wait.

I just wanted to chime in on this topic, and thought I'd update you also.

God Bless you Lottie. I hope you get to start the new trial soon.

Jackie S.

From: Lottie Duthu <lotajam@...>

Subject: [ ] Busulfan (Myleran)

" CML " < >

Date: Sunday, October 17, 2010, 3:13 PM

 

Skip and I discussed Busulfan many times, so we are going to collaborate

on this post. Several people think it saved his life, else why would he still

be walking around, but be aware that it is extremely potent. He said he felt

well enough to continue working and never had to have a transfusion. Now he is

transfustion dependent. When I spoke to my oncologist about him, he seems to

agree that Busulfan saved his hide. LOL. I'm sure the doctor who prescribed it

knew it and told Skip about it, but there was no other alternative 34 years ago.

We also talked about posting something on it, but since no one else had taken

it, some may not be interested. I think it is part of the history of medical

facts concerning CML and the group sometimes discuss that, so I thought, what

the heck, so if you are interested, these are 2 websites you can go to that Skip

is providing from his own research. Skip by the way, is quite a buff, he does

research on many

things and reads a lot. When he speaks, everyone should listen, he's been

around longer than anyone else, so he speaks about his experience with CML. If

you get to know him, you will find out how well rounded he is about other

subjects as well.

Skip said he wondered why doctors didn't still use Busulfan for patients who

couldn't afford the other expensive drugs that we pay $4000 to $7500 a month

for. This drug also crosses the blood brain barrier, so pregnant women would not

be able to use it as a substitute, either - only INF. It is relatively cheap,

so he has a point if you compare costs. Hydrea sells for about $50 a month,

too. Hydrea is used for other things, but because of the nature of the compound

in Busulfan is only used on CML patients under the close supervision of a doctor

and I think that it is sometimes used for transplant patients. These are not

drugs we will ever see selling over the counter (maybe in Mexico, you don't need

a prescription for anything). BTW, Skip, I just realized that I had been

mispelling Myleran all these years. LOL. I think it is not in common use

simply because the drug companies make it available at little to no costs for

those who are financially

unable to pay the higher costs of the TKIs.

http://www.drugs.com/pro/myleran.html

http://us.gsk.com/products/assets/us_myleran.pdf

FYI,

Lottie Duthu & Skip Duffie

[Guest guest]

Great News Jackie!!!  I sent you one message to your website, but could not get

on again for some reason.  Just know you were in my prayers for a great

response to your BMT, and here it is.  So glad to see you on   Keep us all

updated.

God Bless

A.

From: Lottie Duthu <lotajam@...>

Subject: [ ] Busulfan (Myleran)

" CML " < >

Date: Sunday, October 17, 2010, 3:13 PM

 

Skip and I discussed Busulfan many times, so we are going to collaborate on this

post. Several people think it saved his life, else why would he still be walking

around, but be aware that it is extremely potent. He said he felt well enough to

continue working and never had to have a transfusion. Now he is transfustion

dependent. When I spoke to my oncologist about him, he seems to agree that

Busulfan saved his hide. LOL. I'm sure the doctor who prescribed it knew it and

told Skip about it, but there was no other alternative 34 years ago. We also

talked about posting something on it, but since no one else had taken it, some

may not be interested. I think it is part of the history of medical facts

concerning CML and the group sometimes discuss that, so I thought, what the

heck, so if you are interested, these are 2 websites you can go to that Skip is

providing from his own research. Skip by the way, is quite a buff, he does

research on many

things and reads a lot. When he speaks, everyone should listen, he's been around

longer than anyone else, so he speaks about his experience with CML. If you get

to know him, you will find out how well rounded he is about other subjects as

well.

Skip said he wondered why doctors didn't still use Busulfan for patients who

couldn't afford the other expensive drugs that we pay $4000 to $7500 a month

for. This drug also crosses the blood brain barrier, so pregnant women would not

be able to use it as a substitute, either - only INF. It is relatively cheap, so

he has a point if you compare costs. Hydrea sells for about $50 a month, too.

Hydrea is used for other things, but because of the nature of the compound in

Busulfan is only used on CML patients under the close supervision of a doctor

and I think that it is sometimes used for transplant patients. These are not

drugs we will ever see selling over the counter (maybe in Mexico, you don't need

a prescription for anything). BTW, Skip, I just realized that I had been

mispelling Myleran all these years. LOL. I think it is not in common use simply

because the drug companies make it available at little to no costs for those who

are financially

unable to pay the higher costs of the TKIs.

http://www.drugs.com/pro/myleran.html

http://us.gsk.com/products/assets/us_myleran.pdf

FYI,

Lottie Duthu & Skip Duffie

[Guest guest]

Jackie, i echo 's congratulations. So glad to see your post.

Gay Bratton

On Oct 18, 2010, at 5:29 PM, Armour wrote:

> Great News Jackie!!! I sent you one message to your website, but

> could not get on again for some reason. Just know you were in my

> prayers for a great response to your BMT, and here it is. So glad

> to see you on Keep us all updated.

> God Bless

> A.

>

>

>

> From: Lottie Duthu <lotajam@...>

> Subject: [ ] Busulfan (Myleran)

> " CML " < >

> Date: Sunday, October 17, 2010, 3:13 PM

>

>

>

> Skip and I discussed Busulfan many times, so we are going to

> collaborate on this post. Several people think it saved his life,

> else why would he still be walking around, but be aware that it is

> extremely potent. He said he felt well enough to continue working

> and never had to have a transfusion. Now he is transfustion

> dependent. When I spoke to my oncologist about him, he seems to

> agree that Busulfan saved his hide. LOL. I'm sure the doctor who

> prescribed it knew it and told Skip about it, but there was no other

> alternative 34 years ago. We also talked about posting something on

> it, but since no one else had taken it, some may not be interested.

> I think it is part of the history of medical facts concerning CML

> and the group sometimes discuss that, so I thought, what the heck,

> so if you are interested, these are 2 websites you can go to that

> Skip is providing from his own research. Skip by the way, is quite a

> buff, he does research on many

> things and reads a lot. When he speaks, everyone should listen, he's

> been around longer than anyone else, so he speaks about his

> experience with CML. If you get to know him, you will find out how

> well rounded he is about other subjects as well.

>

> Skip said he wondered why doctors didn't still use Busulfan for

> patients who couldn't afford the other expensive drugs that we pay

> $4000 to $7500 a month for. This drug also crosses the blood brain

> barrier, so pregnant women would not be able to use it as a

> substitute, either - only INF. It is relatively cheap, so he has a

> point if you compare costs. Hydrea sells for about $50 a month, too.

> Hydrea is used for other things, but because of the nature of the

> compound in Busulfan is only used on CML patients under the close

> supervision of a doctor and I think that it is sometimes used for

> transplant patients. These are not drugs we will ever see selling

> over the counter (maybe in Mexico, you don't need a prescription for

> anything). BTW, Skip, I just realized that I had been mispelling

> Myleran all these years. LOL. I think it is not in common use simply

> because the drug companies make it available at little to no costs

> for those who are financially

> unable to pay the higher costs of the TKIs.

>

> http://www.drugs.com/pro/myleran.html

>

> http://us.gsk.com/products/assets/us_myleran.pdf

>

> FYI,

>

> Lottie Duthu & Skip Duffie

>

>

[Guest guest]

WHOOPEE! JACKIE, HOW GREAT IS THAT, YOU ARE A WONDER.  SO GLAD TO SEE YOU

POSTING AGAIN, CONGRATULATIONS. LOVE, BOBBY

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Lottie Duthu <lotajam@...>

Subject: [ ] Busulfan (Myleran)

" CML " < >

Date: Sunday, October 17, 2010, 3:13 PM

 

Skip and I discussed Busulfan many times, so we are going to collaborate on this

post. Several people think it saved his life, else why would he still be

walking around, but be aware that it is extremely potent. He said he felt well

enough to continue working and never had to have a transfusion. Now he is

transfustion dependent. When I spoke to my oncologist about him, he seems to

agree that Busulfan saved his hide. LOL. I'm sure the doctor who prescribed it

knew it and told Skip about it, but there was no other alternative 34 years ago.

We also talked about posting something on it, but since no one else had taken

it, some may not be interested. I think it is part of the history of medical

facts concerning CML and the group sometimes discuss that, so I thought, what

the heck, so if you are interested, these are 2 websites you can go to that Skip

is providing from his own research. Skip by the way, is quite a buff, he does

research on many

things and reads a lot. When he speaks, everyone should listen, he's been

around longer than anyone else, so he speaks about his experience with CML. If

you get to know him, you will find out how well rounded he is about other

subjects as well.

Skip said he wondered why doctors didn't still use Busulfan for patients who

couldn't afford the other expensive drugs that we pay $4000 to $7500 a month

for. This drug also crosses the blood brain barrier, so pregnant women would not

be able to use it as a substitute, either - only INF. It is relatively cheap,

so he has a point if you compare costs. Hydrea sells for about $50 a month,

too. Hydrea is used for other things, but because of the nature of the compound

in Busulfan is only used on CML patients under the close supervision of a doctor

and I think that it is sometimes used for transplant patients. These are not

drugs we will ever see selling over the counter (maybe in Mexico, you don't need

a prescription for anything). BTW, Skip, I just realized that I had been

mispelling Myleran all these years. LOL. I think it is not in common use

simply because the drug companies make it available at little to no costs for

those who are financially

unable to pay the higher costs of the TKIs.

http://www.drugs.com/pro/myleran.html

http://us.gsk.com/products/assets/us_myleran.pdf

FYI,

Lottie Duthu & Skip Duffie

[Guest guest]

Jackie--congratulations on your results today! woo hoo!!!

[ ] Busulfan (Myleran)

" CML " < >

Date: Sunday, October 17, 2010, 3:13 PM

 

Skip and I discussed Busulfan many times, so we are going to collaborate on this

post. Several people think it saved his life, else why would he still be walking

around, but be aware that it is extremely potent. He said he felt well enough to

continue working and never had to have a transfusion. Now he is transfustion

dependent. When I spoke to my oncologist about him, he seems to agree that

Busulfan saved his hide. LOL. I'm sure the doctor who prescribed it knew it and

told Skip about it, but there was no other alternative 34 years ago. We also

talked about posting something on it, but since no one else had taken it, some

may not be interested. I think it is part of the history of medical facts

concerning CML and the group sometimes discuss that, so I thought, what the

heck, so if you are interested, these are 2 websites you can go to that Skip is

providing from his own research. Skip by the way, is quite a buff, he does

research on many

things and reads a lot. When he speaks, everyone should listen, he's been around

longer than anyone else, so he speaks about his experience with CML. If you get

to know him, you will find out how well rounded he is about other subjects as

well.

Skip said he wondered why doctors didn't still use Busulfan for patients who

couldn't afford the other expensive drugs that we pay $4000 to $7500 a month

for. This drug also crosses the blood brain barrier, so pregnant women would not

be able to use it as a substitute, either - only INF. It is relatively cheap, so

he has a point if you compare costs. Hydrea sells for about $50 a month, too.

Hydrea is used for other things, but because of the nature of the compound in

Busulfan is only used on CML patients under the close supervision of a doctor

and I think that it is sometimes used for transplant patients. These are not

drugs we will ever see selling over the counter (maybe in Mexico, you don't need

a prescription for anything). BTW, Skip, I just realized that I had been

mispelling Myleran all these years. LOL. I think it is not in common use simply

because the drug companies make it available at little to no costs for those who

are financially

unable to pay the higher costs of the TKIs.

http://www.drugs.com/pro/myleran.html

http://us.gsk.com/products/assets/us_myleran.pdf

FYI,

Lottie Duthu & Skip Duffie

[Guest guest]

Congratulations Jackie for your BCR ABL results. God Bless

T

Sent from my Verizon Wireless BlackBerry

[ ] Busulfan (Myleran)

" CML " < >

Date: Sunday, October 17, 2010, 3:13 PM

 

Skip and I discussed Busulfan many times, so we are going to collaborate

on this post. Several people think it saved his life, else why would he still

be walking around, but be aware that it is extremely potent. He said he felt

well enough to continue working and never had to have a transfusion. Now he is

transfustion dependent. When I spoke to my oncologist about him, he seems to

agree that Busulfan saved his hide. LOL. I'm sure the doctor who prescribed it

knew it and told Skip about it, but there was no other alternative 34 years ago.

We also talked about posting something on it, but since no one else had taken

it, some may not be interested. I think it is part of the history of medical

facts concerning CML and the group sometimes discuss that, so I thought, what

the heck, so if you are interested, these are 2 websites you can go to that Skip

is providing from his own research. Skip by the way, is quite a buff, he does

research on many

things and reads a lot. When he speaks, everyone should listen, he's been

around longer than anyone else, so he speaks about his experience with CML. If

you get to know him, you will find out how well rounded he is about other

subjects as well.

Skip said he wondered why doctors didn't still use Busulfan for patients who

couldn't afford the other expensive drugs that we pay $4000 to $7500 a month

for. This drug also crosses the blood brain barrier, so pregnant women would not

be able to use it as a substitute, either - only INF. It is relatively cheap,

so he has a point if you compare costs. Hydrea sells for about $50 a month,

too. Hydrea is used for other things, but because of the nature of the compound

in Busulfan is only used on CML patients under the close supervision of a doctor

and I think that it is sometimes used for transplant patients. These are not

drugs we will ever see selling over the counter (maybe in Mexico, you don't need

a prescription for anything). BTW, Skip, I just realized that I had been

mispelling Myleran all these years. LOL. I think it is not in common use

simply because the drug companies make it available at little to no costs for

those who are financially

unable to pay the higher costs of the TKIs.

http://www.drugs.com/pro/myleran.html

http://us.gsk.com/products/assets/us_myleran.pdf

FYI,

Lottie Duthu & Skip Duffie

[Guest guest]

Congratulation Jackie. Hang in there.

Sent from my Verizon Wireless BlackBerry

[ ] Busulfan (Myleran)

" CML " < >

Date: Sunday, October 17, 2010, 3:13 PM

 

Skip and I discussed Busulfan many times, so we are going to collaborate

on this post. Several people think it saved his life, else why would he still

be walking around, but be aware that it is extremely potent. He said he felt

well enough to continue working and never had to have a transfusion. Now he is

transfustion dependent. When I spoke to my oncologist about him, he seems to

agree that Busulfan saved his hide. LOL. I'm sure the doctor who prescribed it

knew it and told Skip about it, but there was no other alternative 34 years ago.

We also talked about posting something on it, but since no one else had taken

it, some may not be interested. I think it is part of the history of medical

facts concerning CML and the group sometimes discuss that, so I thought, what

the heck, so if you are interested, these are 2 websites you can go to that Skip

is providing from his own research. Skip by the way, is quite a buff, he does

research on many

things and reads a lot. When he speaks, everyone should listen, he's been

around longer than anyone else, so he speaks about his experience with CML. If

you get to know him, you will find out how well rounded he is about other

subjects as well.

Skip said he wondered why doctors didn't still use Busulfan for patients who

couldn't afford the other expensive drugs that we pay $4000 to $7500 a month

for. This drug also crosses the blood brain barrier, so pregnant women would not

be able to use it as a substitute, either - only INF. It is relatively cheap,

so he has a point if you compare costs. Hydrea sells for about $50 a month,

too. Hydrea is used for other things, but because of the nature of the compound

in Busulfan is only used on CML patients under the close supervision of a doctor

and I think that it is sometimes used for transplant patients. These are not

drugs we will ever see selling over the counter (maybe in Mexico, you don't need

a prescription for anything). BTW, Skip, I just realized that I had been

mispelling Myleran all these years. LOL. I think it is not in common use

simply because the drug companies make it available at little to no costs for

those who are financially

unable to pay the higher costs of the TKIs.

http://www.drugs.com/pro/myleran.html

http://us.gsk.com/products/assets/us_myleran.pdf

FYI,

Lottie Duthu & Skip Duffie